Living With Sarcoidosis
My Story
I was 35, with a husband and a one-year-old, when I started feeling off. Shortness of breath. Struggling to keep up with everyday tasks that used to be nothing. An overwhelming, bone-deep tired that didn't make sense for my life at the time. I was told it was allergies. I knew it wasn't.
When I first heard the word "sarcoidosis," I honestly thought it was something I'd just get over. Looking back, I was so naïve — but I think part of that came from the doctors themselves. They weren't treating it like a big deal, so I didn't either. I was scared, but mostly I was confused. None of it felt real yet.
Then I wasn't allowed to leave the hospital without an ICD. It turned out the bigger concern in that moment wasn't the sarcoidosis itself — it was my heart. Read the full story here.
If you're here because you just heard the word "sarcoidosis" for the first time and you're scared...
I remember that feeling.
Here's what I wish someone had told me.
It's rare, but you're not alone.
When I was diagnosed, I felt like no one around me had even heard of sarcoidosis. It was isolating. But there are thousands of people living this same journey, asking the same questions, and feeling the same fears you're probably feeling right now.
The Googling spiral is normal—but be careful with it.
I know the urge to search every symptom and read every story. I did it too. Just remember that the internet often highlights the scariest experiences, not the most common ones. Let your doctors guide your medical decisions, and let real people remind you that hope exists too.
No two sarcoidosis journeys look exactly the same.
Some people experience a short season of illness. Others, like me, continue to navigate it for years. Your story won't look exactly like anyone else's, and that's why comparing your journey to someone else's usually creates more fear than clarity.
You will have good days again.
Life may look different than you imagined, but different doesn't mean over. There will still be moments that make you laugh, days that surprise you, and memories you'll be grateful you didn't miss. Hold onto those when everything feels uncertain.
Most of all, I hope you know this: you don't have to figure it all out today.
And you don't have to do it alone.
If you've recently been diagnosed and just need someone who's been there, I'd love to hear from you. Send me a message here or through Instagram. I truly mean that.
This space is for
Awareness In Action
Lipstick & Lasagna × Life & Breath Foundation
When I was first diagnosed with sarcoidosis, I quickly realized just how many people had never heard of it. I was trying to understand what was happening to my own body while also explaining a disease I barely understood myself.
That experience is a huge part of why this page exists — and why Awareness in Action means so much to me.
Lipstick & Lasagna has partnered with the Life & Breath Foundation to help bring more attention to sarcoidosis and support the community living with it every day.
For me, this collaboration is another way of doing what I've been trying to do here all along: talk about sarcoidosis honestly, help people feel a little less alone in it, and get more people to actually know its name.
Together, we've created the Awareness in Action collection as one more way to start those conversations.
Because every time someone asks what sarcoidosis is, searches the word for the first time, shares a story, or learns something they didn't know before — that's awareness in action.
Learn more about the collaboration →
Trusted Organizations
Life & Breath Foundation
Foundation for Sarcoidosis Research
Foundation for Sarcoidosis Research
An organization dedicated to raising sarcoidosis awareness, supporting patients and families, and helping fund research toward better treatments and outcomes.
Foundation for Sarcoidosis Research
Foundation for Sarcoidosis Research
Foundation for Sarcoidosis Research
One of the leading organizations dedicated to sarcoidosis education, patient support, advocacy, and research. Their website is an excellent resource for understanding the disease and finding community.
Frequently Asked Questions
I'm not a doctor — this is just the short version. Talk to yours about what applies to you. I am always here for support.
- An inflammatory disease where clusters of immune cells (granulomas) form in the body, most often in the lungs and lymph nodes.
- It can also affect the skin, eyes, heart, and other organs.
- Doctors don't fully know what causes it.
- It can go away on its own, come and go, or become chronic — it varies a lot person to person.
Sarcoidosis can cause fatigue, shortness of breath, a persistent cough, chest pain, joint pain, skin rashes, swollen lymph nodes, and eye inflammation. Symptoms vary widely, and no two people experience the disease the same way.
Sarcoidosis is typically diagnosed using imaging, blood work, biopsies, and other tests. Treatment depends on the organs affected and may include monitoring, corticosteroids, or medications that help control inflammation.
If you're walking through something hard, I'm here with you.
Subscribe, and I'll keep showing up — the hard days and the good ones.
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